Pain Burden in Children and Adolescents With Cerebral Palsy
Completed
Conditions studied: Cerebral Palsy
In brief
Pain in children and adolescents with cerebral palsy (CP) is a significant health challenge that so far has received too little attention. We lack knowledge on how pain is experienced, its consequences and of perceived support in managing pain. The overarching aim of the CPPain-program is to reduce pain experience, pain interference (e.g. pain burden) in children and adolescents living with CP. CPPain has a prospective cohort comparative design and will include before- and after measurements and process evaluation of a nested intervention. This protocol concerns qualitative and quantitative data collection for the baseline of the CPPain program. The aim of the baseline data collection is to contribute in-depth knowledge of the pain burden in children and adolescents with CP. This knowledge is required to develop targeted pain-diminishing interventions in this vulnerable group of children with a high burden of challenges related to their chronic disease. In the next step, nested intervention will be co-created with children and adolescents with CP, their parents as well as health care professionals, and other professional caregivers involved in or responsible for management of pain based on existing research and baseline findings.
Key facts
- Study ID
- NCT04219020
- Run by
- Sykehuset Telemark
- People needed
- 588
- Starts
- 2020-03-12
- Expected to finish
- 2024-08-31
- Last updated by the study team
- 2024-10-16
Who can join
Age: any, up to 67. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Children 0-18 years with a CP diagnosis registered in the Cerebral Palsy Registry of Norway (CPRN), or recruited through child habilitation centers, patient organizations or social media advertizing campains (USA, Canada, Finland \& Sweden)
- Siblings 12-18 years of a child/adolescent with CP (survey only)
- Clinicians identified by parents and/or children with CP as providers of pain-related care
You may not qualify if…
- Unable or unwilling to provide self-report
- Not able to communicate in English or Norwegian
- Lives with the child less than 50% of the time (parental interviews)
Where it is running
- Gillette Children's Speciality Healthcare — Saint Paul, Minnesota, United States
- IWK Health Centre — Halifax, Nova Scotia, Canada
- Arcadia University of Applied Sciences — Helsinki, Finland
- Telemark Hospital Trust — Skien, Norway
- Lund University — Lund, Sweden
Full record on ClinicalTrials.gov
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